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Rare Disease West Michigan - Events

2025 Rare Disease Day Gathering

The Rare Disease Network, which includes Â鶹Çø, Corewell Health Helen DeVos Children’s Hospital, MSU College of Human Medicine, Pine Rest Christian Mental Health Services and Van Andel Institute, will host its 6th annual Rare Disease Day Saturday, February 22, 2025, from 9 a.m. to 4 p.m., at the Prince Conference Center on Â鶹Çø’s campus.

This free event will bring together people with rare diseases, caregivers and families, medical professionals, researchers, advocates and students to share knowledge and experiences, while encouraging and supporting one another.

Ìý

Theme: Bridging the Gaps

Featured keynote speakers will discuss how medical care and research around rare disease is evolving and improving and the state of rare disease in Michigan. Breakout sessions will provide opportunities for attendees to learn more about navigating insurance and finances, recent advances in research, therapy services, and rare disease-focused careers.

Opportunities to Connect

Lunch will be provided. In addition to hearing from keynote speakers and attending breakout sessions, participants will have the opportunity to engage with one another and visit information tables hosted by various advocacy and service organizations.

Schedule

9:00 a.m. Ìý Ìý Registration and Informational Tables
9:45 a.m. Ìý Ìý WelcomeÌý
10:00 a.m. Ìý Keynote: State of Rare Disease In Michigan
11:00 a.m. Ìý ÌýBreakÌý
11:15 a.m. Ìý Ìý ÌýBreakout Sessions
Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý ÌýNavigating Insurance and Finances
Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý ÌýTherapy Services
Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý ÌýRecent Advances in Rare Disease Research
Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý Ìý ÌýRare Disease-Focused Careers
12:00 p.m. Ìý Lunch (free!)
12:30 p.m. Ìý Breakout SessionsÌýRepeat
1:15 p.m Ìý Ìý Ìý Keynote: Evolution of Rare Disease Research and Medical Care
2:15 p.m. Ìý Ìý Rare Disease Research Lightening Talks and Poster Session
4:00 p.m Ìý ÌýAdjourn

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